Project Recognize Grant Will Restructure Sex, Sexual Orientation, and Gender Identity Data Collection

Institute for Sexual and Gender Minority Health and Wellbeing (ISGMH) faculty members and co-principal investigators Lauren B. Beach, J.D., Ph.D., and Gregory Phillips II, Ph.D., have secured a five-year R01 grant of $3.2 million from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) to evaluate and improve methods of gathering sex, sexual orientation, and gender identity (SSOGI) information.

Project Recognize, which includes partners at InterACT: Advocates for Intersex Youth, the Asexual Visibility and Education Network (AVEN), UNC Chapel Hill, Lurie Children’s Hospital, Boston Medical Center, and Northwestern Medicine, aims to develop and test new methods of data collection which are responsive and expansive enough to collect SSOGI information more accurately in population surveys, healthcare research, and clinical and community contexts, ultimately providing a stronger foundation of high-quality data from which we can act to improve sexual and gender minority (SGM) health. ISGMH faculty members Patrick Janulis, Ph.D., and Kathryn Macapagal, Ph.D., are co-investigators on Project Recognize and will help to lead the project’s psychometric evaluation and qualitative data capture activities, respectively.

Phillips expressed hope that Project Recognize can set a better standard for more accurate SSOGI data collection.

“Really, this goes beyond just research studies. We’re investigating things like medical records and federal surveys, too. The goal for all of those areas is to find out how to ask questions in a way that is culturally appropriate and culturally understandable to people regardless of where they live, how old they are, or how they identify,” he said.

Health research relies heavily on data collection from population surveys, health records, and research studies. Access to accurate and comprehensive data that incorporates the full depth and breadth of individuals’ sex, sexual orientation, and gender identity is crucial to understanding health disparities and providing adequate and effective care. Well-documented disparities in areas such as alcohol use, other substance use, and mental health between SGM and cisgender heterosexual individuals necessitate further research to be better understood and addressed. Additionally, the notable variability among SGM subcommunities also needs further study.

Current methods, however, often hinder research on these populations because they fail to accurately or adequately collect SSOGI information. For example, surveys and patient forms too often conflate sex and gender identity by presenting only “sex” as a response category, and typically also falsely assume sex to be an immutable characteristic, failing to account for the ways in which many individuals alter their sex over time. Similarly, collecting data via the falsely trichotomized “Male/Female/Transgender” schema remains all too common. Most methods also do not account for the diversity of sex beyond the male/female binary, effectively rendering intersex individuals invisible. These and other gaps in data collection systems contribute to incomplete or imprecise understanding of SGM health disparities.

Phillips cites these pervasive issues as the primary motivation for the team’s decision to pursue this new project.

“We’ve been studying SGM populations for years, and we’ve all run up against the challenge of working with bad or incomplete data. As a matter of fact, Lauren and I have even given talks about how to make the best of bad data because the problem is so pervasive. With Project Recognize, we decided that we wanted to be part of the necessary work to address this issue,” said Phillips.

Project Recognize aims to address gaps in data collection by establishing standardized, community validated methods of data collection that are both flexible and comprehensive. The project has three main aims:

• Synthesize and summarize how SSOGI measures have been assessed in health research and practice.
• Iteratively develop culturally responsive and comprehensive assessments of SSOGI measures through qualitative methods.
• Assess the acceptability and effectiveness of new SSOGI measures.

To achieve these, the team will first conduct a large-scale assessment of current methods for collecting SSOGI data, then develop a novel system utilizing feedback through focus groups, interviews, and various other means of input. Final analyses will determine the new methods’ effectiveness across a wide range of settings and for a wide range of individuals, with special emphasis placed on historically understudied populations. In order to ensure that the project’s findings and deliverables have a meaningful impact, the team will also be dedicating effort in the final year of the project to advocacy surrounding changes in policy and practice which will help to ensure broader uptake of newer, more responsive, and better quality SSOGI measures.

A noteworthy element of the project is its heavy emphasis on community involvement. Phillips said he is especially grateful for the large-scale participation from traditionally underrepresented communities such as intersex and asexual individuals. “Those two groups are among those consistently left out of the narrative when studying SGM populations,” said Phillips.

He believes this work is crucial to developing systems of data collection that are truly representative of the entire SGM population.

“There’s a lot to be said about having lived experience, but just because you’re a member of the LGBTQ+ community doesn’t mean you know everything. Lauren and I know that we don’t represent every single community, so we understood from the start that we needed that kind of representation. We want this to be something that actually reflects everyone’s experiences, not just that of the researchers.”

The project team is excited and enthusiastic to welcome collaborations from researchers, community members, advocates, organizers, public health professionals, clinicians, and other parties invested in SGM health who are interested in the project. Individuals with questions about Project Recognize can reach out directly to Drs. Phillips and Beach at glp2@northwestern.edu and lauren.beach@northwestern.edu.